Is it possible to still be in "honeymoon" 2 years on?! Unexplained hypos.

[chlsybwnx]

Apologies if this is the wrong place, anyone's more than welcome to move this post to where it's supposed to be..

I was diagnosed back in May 2015 with Type 1 diabetes, at age 21. Everything fine, carb counting, HbA1c going well, DSN very happy lady. In the early days I had a few spells of unexpected hypos nothing I couldn't handle myself and after consulting DSN she explained about honey moon period. For the last year hypos only when I've overshot the insulin or down to increased exercise etc.

This past week however, has been a struggle! All started last Wednesday when waking up to my alarm, getting up feeling dizzy, checking my blood and come up with a reading of 2.5. Thinking it was just a one off, I didn't change Abasaglar and just carried on, after the 2nd time I figured I must reduce the night time insulin. So cut it by a 1/4, still no change. I then started having hypos all times of the day during the weekend.

As of this Monday I have now cut Abasaglar by 1/2 (gone from 20 units to 10), I also cut my Apidra that I take every time I eat by 1/2 (1:10g to 1:20g carbs). Still hypo'ing. In fact, I have had around 20-25 readings in the 2.5-4mmol range since the 19th.

Yesterday I had a rather horrid hypo at 1.9 before I recognized it, felt like utter junk after, and today to be safe, I haven't taken any insulin but bloods reading in the 4/5's even after eating some chocolate and toast.

Anyway, my question, I am just wondering if this could be the "honeymoon period" that my DSN mentioned before?! And how long can that last? If not, what could it be!? Nothing has changed and its driving me a little crazy!

 

[azure]

Has anything changed at all? Your diet? Your weight? New meds? Anything like that?

If it hasn't, I'd phone your DSN just so that you can get reassurance from them.

 

[Deleted Account]

Have you done a lot of exercise or drunk a lot of alcohol recently?
Both of these can reduce your BG over a few days.

 

[TheBigNewt]

How much bolus do you take now with the average meal? Were you ever in DKA when first diagnosed? I'm wondering if you are truly a Type 1 diabetic at all.

 

[chlsybwnx]

How much bolus do you take now with the average meal? Were you ever in DKA when first diagnosed? I'm wondering if you are truly a Type 1 diabetic at all.

I don't drink alcohol at all, weight still the same, diet hasn't changed apart from going dairy free over the past 2 weeks, and I haven't increased exercise! Didn't think it would be the dairy. I changed from Lantus to Abasaglar around 3 weeks ago due to nhs cuts but, didn't have any change in the first 2 weeks.

Usually around 10 units per large evening meal, last night I took 5, (for the past 2 years would usually take 10).

I'm open to the fact that I might not be tbh, It's been one big guessing game with me so far...
I had a very prolonged diagnosis but, everyone I've met so far have ultimately come to the conclusion of, type 1.
First symptoms arose, bs read 20mmol but, I couldn't get to see anyone due to lack of consultants, for almost 4 months after finding out I had "a type of diabetes" at my local gp. After several cancellations with the consultant by the time I had been seen, I had lost 3 stone, (went from 11 to 8) incredibly ill and definitely had ketones present. DSN was so shocked at the fact I didn't get seen before and was surprised how I was still conscious with bs unable to be read with her meter. They were pretty lapsy daisy with me all along!

All I know for sure is my test results read: IA2, positive, GAD negative, ZnT8 positive.

Nobody could understand the GAD negative, so had the ZnT8 test recently to see what that said.

(I'm typing this now with a reading of 10.1mmol, shaking like crazy a woman, wouldn't usually be happy about this but, I hope to holy cow it stops dropping as I am exhausted to say the least!)

 

[GrantGam]

All I know for sure is my test results read: IA2, positive, GAD negative, ZnT8 positive.

Nobody could understand the GAD negative, so had the ZnT8 test recently to see what that said.

The GAD test is not definitive. I read somewhere that up to 25% of T1's won't test positive for GAD antibodies.

I'd go with what @azure has said and get in touch with your DSN/diabetologist.

 

[azure]

@chlsybwnx If it was me, I'd try swapping back to the Lantus and re-introducing dairy (unless there's a medical reason not to)

At least then you'll have everything exactly the same and be able to see better whether there has been a change for no reason. It does seem a coincidence that you made those changes then got all these lows.

 

[chlsybwnx]

I don't even know why I haven't contacted her yet if I'm being completely honest! Diabetes is definitely one of those things I try so hard to control myself! Thanks for all your help guys, just didn't want to bug her and get faced with the whole "honey moon period" again!

 

[chlsybwnx]

@chisybwnx If it was me, I'd try swapping back to the Lantus and re-introducing dairy (unless there's a medical reason not to)

At least then you'll have everything exactly the same and be able to see better whether there has been a change for no reason. It does seem a coincidence that you made those changes then got all these lows.

I'll definitely take it on board, it was the DSN idea to switch me to the abasaglar due to budget cuts so maybe she'll decide to pop it back on my prescription. I've been dairy free before for a few months earlier (only because of bloat issues!) this year and never had anything like this, so thinking logically it must be the Lantus change even though they tried telling me it was the exact same product, or something else entirely.

Thanks for your replies! Really helps me consider every little change! Not usually a go seek help/opinions person!

 

[ElkBond]

I'll definitely take it on board, it was the DSN idea to switch me to the abasaglar due to budget cuts so maybe she'll decide to pop it back on my prescription. I've been dairy free before for a few months earlier (only because of bloat issues!) this year and never had anything like this, so thinking logically it must be the Lantus change even though they tried telling me it was the exact same product, or something else entirely.

Thanks for your replies! Really helps me consider every little change! Not usually a go seek help/opinions person!

Well I am still honeymooning at 1 year 5 months with no end. My body can handle my basal ok but sucks at bolus so I have a normal I:C ratio. I have unexplained lows too but I am on a pump and temp basal my way through it.

 

[becca59]

3 years in and still honeymooning, though the gaps between are growing ever larger and the time the pancreas is working gets shorter. Consultant said it happens, particularly when diagnosed older (54). It is a pain in the neck. As soon as I start hypoing I cut back on insulin. Just get it right, when hey ho sugar levels go back through the roof.

 

[Daibell]

Hi. Honeymoon periods can go on for years. BTW the antibody tests can be helpful but probably the more useful test is the c-peptide as it tells you whether you have high or low insulin rather than what caused it to be low if it's low.

 

[22nw22]

I'm sorry you're going through this.

 

[pinewood]

I'm 2.5 years diagnosed and still experiencing the honeymoon period. My insulin requirements have not changed much since diagnosis.

 

[22nw22]

I'm 2.5 years diagnosed and still experiencing the honeymoon period. My insulin requirements have not changed much since diagnosis.

I am so sorry. Maybe you should call your doctor to try and fix it.

 

[Incidentals]

You are not a commodity to be budgeted for you are a complex mechanism that was finely balanced and doing fine... They should not change what you do to suit themselves , but do stuff to suit you... they need your permission to do anything ... stick to your guns... go back and tell them to put you back as you were before and once you are up and stable ( proof enough for most of us that the treatment is correct) then you can try the "cheaper approach" - as soon as you start to react as you are now you can stick it to the DN and take control - they are here for us - they want to be well paid to care for us - WE are what maters not them or their budgets. Rant over - I don't mind being a guinea pig when it can help others, but I cannot afford to be under treated. Never be afraid to annoy them ,they will revell in the attention and prehaps learn something about diabetes along the way - I haven't met a Diabetic DN yet - I have however met a number of diabetic nurses who have absolutely no clue. ( but of course they know because they are) Get out to the doc and don't take the waiting list as something set in concrete, you are important and unlike a lot of other people who monopolise the list , you will attend and you need to attend - I would hope your local Doctors would sort you out rather than the medicals in your local hospital when your care has suffered just too much.

 

[Sibyl]

I was diagnosed T1 in October 2014. Saw my consultant last week and he thinks I'm still in the honeymoon period too. In March my insulin requirements went up and I thought that was the end but weirdly last month things settled down again! Consultant said they now think it's important to keep fairly tight control as soon as u get the diagnosis. By being careful they think you can extend the honeymoon.

 

[Kbarbaracollins_]

I was diagnosed T1 17 years ago and am still in the honeymoon period. Luckily I discovered Bernstein during the first 6 months and started his low carb diet plus exercise. While I don't follow it as religiously as he suggests, it's meant I am still on very low doses of basal and bolus insulin.
I went to see Dr Bernstein 6 years ago and spent 3 days with him one to one while he taught the finer detail of his regime. He confirmed that I have managed to preserve some of my beta cells by low carb and exercise. He estimated I am still making up to half my daily requirement of insulin - but this is only when I stick to strictly low carb. If I eat pizza, spaghetti, bread etc I go sky high.
Bernstein believes with his regime the honeymoon period can continue forever. Fingers crossed